Welcome

In March of 2008 I began treatment for a potentially fatal heart arrhythmia whose cause was unknown. I was fit and healthy, having spent a good part of my adult life as an elite cyclist, much of it racing in Europe.

After 5 years of fence-sitting on the part of my doctors, I have been given a diagnosis of ARVD/C (Arrhythmogenic Right Ventricular Dysplasia / Cardiomyopathy). I lack the known genetic markers for the disease as well as some of the structural changes that accompany ARVD/C, and my condition has shown no indication of being progressive (yet).

There is a growing population of current and former endurance athletes who end up with acquired arrhythmias, and a diagnosis of ARVD/C. But by placing these athletes in the ARVD/C patient population, we are potentially ignoring the very real likelihood of an acquired condition, similar, but different, from ARVD/C.

This blog is written as a resource for athletes with acquired arrhythmias, as well as anyone about to undergo endo or epi-cardial ablation, or the implantation of a ICD. It is also written to help generate some critical mass of interest in support of further research into acquired arrhythmias in endurance athletes and others. Feel free to contact me through the comments page if you have any questions or wish to make a written contribution to this blog.

Tuesday, October 19, 2010

Trials and (De)fibrillations

All downhill from here...summiting Mont Ventoux, before my heart went south.

It has been one year and three months since I last updated this blog. This negligence has been due to general health and well-being, coupled with hyper-activity in the rest of my life – my final year of architecture school, and all the panic and excitement of exiting academia into a crappy economy. In all that time my heart held steady, except for one fun moment...

Shock of the New

Late February 2010...I’m deep into my “thesis semester” and back to living the life of a proper architecture student – not enough sleep, not enough exercise, too much caffeine, too much sugar, computer-monitor-eyeballs and adhesive-coated finger tips – the usual cliché.

Through this I try for –but do not always succeed at – a few hours a week either riding or running. Since recovering from my multiple ablations of 2008 I have noted that my heart does best when I get regular, moderate exercise. If I go more than a day or two without, I get a ramp up of PVCs accompanied from time to time with some low grade chest-pain. Likewise, if I exercise too much too soon – without a slow increase in time and intensity- I also get PVCs and chest pain. The key seems to be staying consistent and loyal to a modest exercise program, which is hard in the studio environment.

The day my defibrillator went off I was well rested, fed, and fairly unstressed. After a morning meeting with my thesis advisor I had two hours free and headed out for a short ride. The previous few weeks I’d mostly been doing intermittent, early morning hour-long roller rides before heading into studio, but this day the roads were clear of snow and it was unusually warm. Ten minutes into the ride, with no warning and no clear reason -riding along at a modest endurance pace- I went into V-tach. I felt it right away and stopped the bike. There was no doubt this was a legitimate bout of VT, I started my routine of vasovagal maneuvers –coughing hard and thumping my chest. The combination of manic coughing and VT made me a bit lightheaded, sending stars shooting across my vision. After a few coughs and thumps I felt that the VT had passed, I got back on the bike and turned around to go home and call in the episode to my docs. About twenty seconds down the road the defibrillator went off.

It felt like getting hit in the chest with a flying hockey puck while someone is popping two large balloons next to both ears and simultaneously turning out the lights. Yes, that’s right, this hallucination has visual, audible AND sensible components. People pay a lot of money for drugs that can do that, and I get it all from a little box in my chest. The shock did not knock me off my bike, though I probably bobbled for a second. I was moving at maybe 15mph. I immediately stopped to process what had happened.

Cell phone call to my EP at U Penn: after what seemed to be a standard-issue post-shock debriefing, the nurse on duty told me not to get back on the bike but rather find a ride home. That seemed silly, as I felt fine at this point, more traumatized by the implications of being shocked than by the shock itself, which was really less of a big deal than I had been expecting. I rode home at a pedestrian pace.

My “Carelink” transmission revealed that I had been in VT in the mid 200s (my ICD monitors at 160 and shocks at 225) The ICD tried “Anti-Tachycardia Pacing” (ATP) before shocking and was unsuccessful. With ATP the ICD tries to take over the rhythm of the heart electronically by first speeding up the tachycardia and then bringing it down slowly. It seems that that was happening as I was simultaneously trying my own vasovagal maneuvers. Perhaps the two techniques clashed and neither worked. I’ve generally vasovagaled my way out of VT in the past, so I was somewhat surprised that it didn’t work this time.

So the shock was legitimate, not a device error, and it came out of the blue. No Herculean effort brought it on, no over-indulging in caffeine or other substances, no cataclysmic event, just a random and capricious bout of VT. Nothing indicated this might happen before, and there were no “after shocks” after the fact. Not even a ramp up of PVCs. I saw my EP a few weeks later, we both agreed that I could start exercising again, that I should be attentive, and come back for some more testing when I had the time.

At first I thought this might lead to another ablation, but the episode turned out to be a complete outlier. Resuming exercise went off without a hitch. When I had the time, I slowly increased my maximum heart rate until I was occasionally hitting a conservative outer limit of 90% of maximum heart rate.

Techie Testing Talk

When school wrapped up at the end of May I went back in for testing. The goal was to induce VT, first with a treadmill stress test, a standard “Bruce” protocol. Generally with these stress tests the doctors are happy with anything more than 12 minutes, however I like to get a new maximum heart rate out of it and try to stick it for as long as possible while in a safe, controlled environment. My last stress test, in December of 2008, three months after my third ablation, I went to 17 minutes. This time I felt much better at 17 minutes, but the HR had been pegged at 175 for the last two minutes and didn’t seem to be going any higher, so I called it at 17. By the Bruce formula for estimating VO2max (14.8 - (1.379 x T) + (0.451 x T²) - (0.012 x T³) that put me at an oxygen uptake of 62.74 ml/kg/min. This in itself is pretty satisfying, as my tested VO2 high point was 72 ml/kg/min back when I was racing full time. I also tend to do much better on a bike-based VO2 test as I have pretty poor running efficiency. To have lost only 10ml over the course of years and through all the heart surgery, with a substantial part of my heart not contributing to its pumping, was further vindication of my hunch that my heart condition has not been getting progressively worse.

The second test was a “Non-invasive Programmed Stimulation” aka NIPS test. This is where they knock you out and run your heart through the gears using the ICD and several heavy doses of Epinephrine. Again, I was uninducable.

The results were puzzling but satisfying. In consultation with my EP, we speculated that I may in fact be “healing” the scar tissue created by my prior ablations; in other words the tissue that originally created the arrhythmia and had been put out of service by the ablation might have had a glimmer of electrical activity. This could happen again, of course. My exercising might in some ways encourage this process, but it is not a process of degradation, it is more a process of simple change over time, of what is generally considered positive “training effect”. If one of these sites of scaring comes back online on a regular basis more ablation on that site may be needed.

Though my heart was not remapped in an EP study, my ICD reading from the VT episode indicated that the VT came from the same area that it had always come from, indicating no new sites of scaring. The occasional PVCs recorded on my stress test ECG also verified this. I was given another get out of jail free card.

The State of Things

So now, as of October 2010, two years after my last ablation, and 2 years five months sporting an ICD, all is well. My activity level is as high as ever, I ride without limit – apart from work, and life’s responsibilities – I take no drugs for my condition, no special vitamins, no nothing. I ride in the hottest and coldest of conditions without ill effect, indeed I tend to ride better the hotter it is. I continue to harbor notions of competing again some day (perhaps in the more tempered “age-graded” events), but realistically I know this is unlikely. I worry about breaking my ICD, I worry about pushing too hard, and I simply don’t have the time to devote to being competitive. Never a “natural”, I’ve always had to train harder than everyone else, and now my developing architecture career is my priority and training is a luxury. So I confine myself to the occasional weekend throwdown and maintenance rides.

If any of this changes, if my condition worsens, or my defibrillator speaks up, I will document it again. In the meantime, silence is golden.

13 comments:

Craig, thanks for the update, I'd been wondering about your progress since I stumbled on your blog just a few weeks ago. I was in the middle of documenting my own experiences (squeezingoutsparks.blogspot.com) when I found your better articulated and more thorough posts. Good luck with everything. Lynn

Hi Lynn,Thanks for the link. Very interesting story, and well-told. I've put a link on my sidebar. If you come across other interesting online documentation let me know, I want to build the sidebar links a bit. Good luck, and let me know if you have any developments. Cheers,Craig

Craig --- Your chest pain is interesting. I had an epicardial ablation on the LV in June '10 for scar tissue of unknown etiology (differential diagnosis: virus scar, sarcoidosis, or an ARVD like effect on the left ventricle). I'm 42 and ran a marathon under 4 hours last year until VT events early this year necessitated an ICD. I haven't had any arrythmias since the epicardial (4 months now), but I find getting back into exercise challenging mostly because of chest discomfort. I hike hills briskly 3-4 miles and then lift weights, but that's about all right now. I'm not on any meds, but I pop Ibuprophen which helps significantly for chest pains I get if I exercise too much or too fast. The chest pains/discomfort is now slowly lifting as I start to build endurance and I beleive it is receding chest inflammation (costochondritis maybe) from the epicardial procedure (because NSAIDs reduce the problem nicely). Has your EP mentioned this possibility in your case? Also, do you have a feel for how much heart muscle is destroyed after these epicardials? Significant enough to permanently lower atheltic performance? Your Blog has been a great source of comfort and encouragement to me. Thanks! Andrew

Craig,Thank you so much for writing this blog. I've just read it from start to finish, and your story sounds very familiar. I'm actually sitting in the hospital in London, Ontario and will be getting my ICD put in tomorrow. I had my first VT experience on Oct.25 during a swim workout, and have been in the hospital ever since. I've been a competitive triathlete for many years and have experienced some major emotional ups and downs over the past few weeks as I've gone through the testing process. I also went into VT during my stress test, and had an EP study done where they ablated two areas, but due to the number and locations of PVC's after the ablations, it's been recommended that I on a beta blocker and get an ICD. Your story gives me hope that I may eventually get to experience the thrill of racing again. Thank you for sharing.Chandra

Craig,I appreciate the update. You have been very inspirational for all in the vtach club. Not only is a physical recovery, but a emotional recovery as well. I am very glad that you are returning back to a normal life essentially. Amazing that you are not on any medication. Best to you and your continued good health. Best,

hi craig my name is john, its nice to finally find someone on the internet that seems to have the same prob i have. My v tach does not last long, its more like burst's of v tach for like 20 seconds or so and then stops and starts back up again and stops and goes onlike that for awhile. all hearts dr's say my heart is structurally good and tells me not to worry about it which drives me crazy. They said i was not a candadate for ablation because of where my pvc's originate at. So i just have to live with it. They say I dont need an ICD because iv'e never stayed in v tach for a long time. But everytime it starts im scared its not going to stop. Plus now I have no insurance and that makes things worse because i can't go to dr as often. I'm a 28 yr old male X athlete myself. I played football and basball in college which is not nearly as intense as bikeing but i do wonder if its caused some of my prob.

Thanks for your blog. I've been doing triathlons for the past two years and got hooked on the sport. Just recently though, I started experiencing exercise-induced heart rate spikes and palpitations which were identified as v tach by my cardiologists. Fortunately, I never passed out. But now the doctors have me taking beta blockers and are recommending icd placement, which I am still deliberating.

I was wondering if you or any of the readers here have taken beta blockers. If so, what impact does it have on your performance? Does it make you feel different when you're exercising?

Craig, enjoyed your articulate description of the VT journey and accurate depiction of the procedures. I had my first VT in 2000 at age 35, but unlike you, have never been a devoted athlete. I simply was an "on the go" registered nurse, mother and wife constantly in physical everyday motion enjoying life's pursuits. I had several syncope episodes over the years, but this time the episode lasted over an hour and when I finally recognized I wasn't just being a nervous/ anxious female and went to the ER, the EKG registered the pulse above 300 bpm and I finally self-cardioverted about 15 minutes after arrival. I had and RF Ablation of the RVOT where multiple sites were found and an MRI conclued non ARVD but idiopathich VT. The ablation in 2000 wiped it out until March 2010. It is now back with a vengeance: RF Ablation 4/2010, followed by a December recurrent sustained VT episode that lasted longer than one hour. This event was especially fun because I was travelling and it required external defibrillation in a podunk Texas hospital. I nearly died from their inexperience with handling the code and having wrong cardiac meds IV pushed causing my B/P to dip into the 70/30 range. My doctor attempted another endocardial ablation again in 2/2011. Like you I had a brief interlude of normalcy and harmonious rhythm until the VT reared again. Another RF ablation, and cardiac MRI where ARVD was ruled out and I am now awaiting the next plan....Just finished 30 days of event monitoring while taking Beta Blockers and Flecainide twice daily. Bursts of VT are still occurring, but brief only about 10 consecutive beats. Living with the slight paranoia coupled with extreme turtle like energy levels from the meds and frequent bouts of PVCs. Wondering whether to seek an ICD for the protection but also knowing the course of treatment it demands...replacing leads, batteries, etc. My EP is Director of Electrocardiology in Houston at the Texas Heart Institute /Baylor College of Medicine (where cardiac bypass surgery was pioneered) so I trust his advise and consult with colleagues to care. He is planning on presenting the case at an EP symposium for study, since I had multiple sites and VT types and feels my case is highly atypical. I enjoyed reading your progression and return to normalcy as you have stabilized and reached acceptance in this disease for the most part. I too experience exacerbations that do not coincide with typical triggers...I have had the 1/2 margarita with no PVCs and 1/2 caff cafe with not even a smidgen of erratic beat. Why the heck do I wake at nite in V Tach? I'm keeping the faith that all my occurrences have happened with good outcomes and I have not lost consciousness or been hemodynamically unstable without having medical support nearby to intervene. Will continue to monitor your posts and Good luck with your journey as well!!!!

I was surfing my beloved google looking for results on the controversial fish oil and VT patients (I recently narrowed down my strange rise in PVC's to the recent addition of Fish oil to my vitamin regiment. Anyway I am a ICD patient x 3.5 years, received appropriate shocks on 4 different occasions and the last one being 28 times in succession (VT Storm)pre-ablation. My interest in my condition (idiopathic VT)has lead me to extensive research on VT-ablation; specifically for hemodynamical unstable VT. My research lead me to Dr. Vivek Reddy. After a 10 hour procedure in Boston's Mass General Hospital, this Harvard grad was able to map out 8 foci with successful ablation on all but 2. The remaining ones were too deep within the intraventricular septum. One was a "trans cutaneous approach" to access the epicardical ablation site. That was the spot causing most of the problems. Anyway....I just wanted to chime in. I'm actually surprised how many VT patients have commented on your blog that are still athletes. Thats inspiring. Unfortunately the side effects of the inderal and mexiletine keeps my heart rate below 130 no matter what the work load so the oxygen demand is higher than the supply. I exercise at a decent level, but when I push it too hard I feel faint. I'd like to see a forum for icd athletes to discuss heart rate monitors and others. please post if there are any.

I can't tell you how much i have appreciated your blog. I have returned to it many times as I have gone through my own journey with exercise induced v-tach and every time it somehow gave me peace of mind to know that there was someone else who had the same fears, frustrations, and pains. Your last post gave me much hope that there is a light on the other side of this tunnel. I was a college athlete and have exercised consistently my whole life, it is crazy how much this can turn your life upside down. I have received some of the best care and am very fortunate to live in a metroplex where quality healthcare is readily accessed. Anyway, I just wanted to say thank you very much for helping a stranger more than you will ever know.

Hey Craig,Hope all's well. Found this in the sports pages today. Even though I've been feeling well since my 2nd ablation in Dec. '10 when I read these other accounts it brings the whole ordeal to mind. I really empathize with the guy, as I'm sure you do. I thought the night time aspect of this story was interesting. Just shows there are no hard and fast rules. Lynnhttp://www.freep.com/usatoday/article/55244236?odyssey=mod%7Cnewswell%7Ctext%7CSports%7Cp&usatref=sportsmod